End of life and Medicare

[Gardnr]

Ok, just family as examples of death in Canada.

Is my family the norm? I don't know that but I do know that when directions are expressly stated and confirmed, they are followed.

Part of the problem that I hear about is that so many people don't have the necessary conversation about their choice of death which leaves the medical community in the position of striving to prolong life with interventions until a decision in made.

Dad was diagnosed terminal in 1994 March. He opted to go home, take no treatment. Home care and hospice. In home care when he was approaching the end of his 4 month dying process.

Mom was diagnosed terminal in 2007 November She opted to go home, take no treatment. Home care and hospice. My sister and I provided her in-home care. Medicare covered all her meds and equipment. The only thing we paid for was attends when she was ready for them. Final Medicare statement after her death? $2876. The cost of 7 weeks.

Each of my parents had a living will and Durable Power of Attorney for healthcare. Neither were challenged. Death with dignity is possible in the USA (and at low cost) and has been for a long time.

It is very important that all family is CLEAR on the expectations of family members. It is also important that family not want the ill person to be lying in a very expensive hospital bed.

The problem in the US is that the general population wants LIFE at all cost. No matter what "don't let XXX die"! go to surgery! go to the ICU! put the tube in and ventilate!

80% of healthcare dollars in the US are in the final 30 days of life. This is not discriminated by age or situation. It's the newborn, the preemie, the very old, the trauma victim...I've worked in the OR since 1981....you can't imagine what I've seen. It's not heroics, it's a travesty. Demanded by families who can't let go.

It's one of my soapboxes.

[iris lilies]

I know Gardnr’s experience with long drawn-out deaths is real because I hear the same reports from my relatives in the healthcare world.

All 4 of our elderly parents died a natural death, not prolonged, not suggested to be prolonged by either physicians or family. But we are all practical in life so placing comatose granny on life support or “doing everything possible” was not anyone’s plan.

[ApatheticNoMore]

Demanded by families, hmpf whatever. What if the person gave as a request to keep them alive. Then you think families should not honor the person's wishes? Are living wills only to honored in one direction basically? Oh is it just "blame family" because one doesn't really know why families are making the decision.

I have always found the discussions of such things on this forum to be complete and utter nonsense. I have not found doctors to push to extend life. No they push to end it when it's time, they just don't force one too, at least not right away (probably eventually), is the argument they should right away?

I find no correspondence to reality of this discussion at all.

[JaneV2.0]

My father had a prominently posted DNR. When he had a major stroke, my SO* (!) and I were called in and asked if we wanted to withhold treatment, water, etc. We suggested they ask him what he wanted. Turns out he wanted to live. You don't know until it happens.

*When they were trying to determine Father's competence, a doctor asked him how many children he had. His answer didn't seem right, being one too many. Further questioning revealed he was counting M, my partner. My father wasn't the demonstrative or openly sentimental type. I still tear up, remembering.

[Teacher Terry]

My father had a big stroke at 59 and my mom with some help from me cared for him at home for 14 years. At 73 it became too much so he was transferred to a VA hospital for a week and then he was supposed to go to a nursing home. They discovered he had a banana sized aneurism in his stomach and wanted to operate. We said no as he had been asking God daily to take him for the last 10 of those 14 years. Plus he had severe emphysema and at 6” weighed 90 lbs. He was not competent because the stroke left him with major brain damage. After we left the hospital tried to talk my dad into signing the paperwork for surgery. He always said he wasn’t going to a home. He asked me what day he was being transferred and died 2 days later before going.

[Teacher Terry]

My mom went through a bout of stage 1 breast cancer at 78 with surgery only. Then at 84 same thing for colon cancer. Then at 87 she gets lymphoma so the cancer is on her stomach, liver and colon. She had pain especially after eating. She wasn’t going to get treatment but they convinced her to do chemo. She lived until almost 90 alone but at times very sick and my 2 retired older siblings would stay with her for anywhere from 1-4 weeks at a time. I used up all my vacation and sick leave to fly there and help. A month before she died they sent her to a radiologist who said she would only live a month yet wanted her to do daily radiation. I said is that how you want to spend your last month. She didn’t do it. A week before she died she fell and couldn’t get up. Didn’t have her cell phone in her pocket like we told her so she laid in her own waste for 24 hours until her sister that lived across the hall checked on her. That was a awful death.

[Gardnr]

Demanded by families, hmpf whatever. What if the person gave as a request to keep them alive. Then you think families should not honor the person's wishes? Are living wills only to honored in one direction basically? Oh is it just "blame family" because one doesn't really know why families are making the decision.

I have always found the discussions of such things on this forum to be complete and utter nonsense. I have not found doctors to push to extend life. No they push to end it when it's time, they just don't force one too, at least not right away (probably eventually), is the argument they should right away?

I find no correspondence to reality of this discussion at all.

Um, OK, whatever. You have obviously NOT witnessed family members talking over the patient who says NO but browbeating them into saying yes with their shouts and wailing over the information offered by a surgeon and/or specialist.

Again, you cannot imagine what I have witnessed in my career.

[jp1]

Death panels.

While that term certainly causes volatile reactions I think the reality is that we need to consider placing limits on what treatments will be offered depending on the patient's particulars.

Initially, though, at least rather than shove those "death panels" down people's throats probably a better plan is like Minneapolis or some other city (sorry I don't remember where) has done where everytime anyone goes to the hospital they are asked if they want to create living will documents expressing their desires if things go south. The result being that people have to think about their own mortality when it's still an abstract concept.

But eventually we need to decide, as a society, that people who are 90 years old or older, (or whatever we decide is the right age) should not have cancer treatment, not have blah blah blah treatment. It just doesn't make sense. The money spent is a waste. The patient most likely has no hope for any sort of quality of life. I was agonized when a dear friend's grandmother (94 years old) was diagnosed with brain cancer after she had fallen and ended up in the ER. She agreed to surgery and died on the table after several hours. I get it. No one "wants" to die. And no one's loved ones want to say "grandma, you're old, it's time" but at some point it IS time. I can only guess how much that brain surgery cost, but F*** what a waste of money and needless suffering.

Personally I've made clear to SO that if my life before the acute situation was bad and the treatment will not do better than get me back to where I was before the acute situation that I don't want any treatment beyond palliative. I'm only 51 so hopefully we're still a long way from him having to make that decision. But I hope he follows through with my wishes. My dad would've been better off if the rapidly developing pneumonia had killed him inside his assisted living apartment where no one would've found him. Instead he collapsed in the hallway and got sent to the ER in time to be saved. Only to spend the next 6 months steadily declining in abject misery before finally passing away.

[Teacher Terry]

Totally agree JP and G.

[pinkytoe]

Before medical directives were prevalent, my mom suffered a massive stroke at 67 that sent her to a nursing home (Medicare paid whatever was allowable at the time) where a feeding tube was inserted. Every couple of months, she would get pneumonia and her primary care doctor would order antibiotics and she would get better. She laid in that bed with a feeding tube for two plus years without moving or opening her eyes and I watched her hair grow long and white. There was nothing I could do to let her go... until one last pneumonia occurred and all my siblings happened to be in town. We made a plea to the doctor to not administer drugs and for some reason, he finally complied. She passed quickly but to this day, I am so regretful that she had to suffer like that. I know she would not have wanted to be seen like that for days on end when there was no hope of recovery.